The words “fix him,” though uttered innocuously, haunt me. Granted, they were said long before we even thought a diagnosis might be needed, and given that I harbor no hard feelings toward the person who said them, they reverberate in my mind, cut my mother’s heart. Fix him…..there will be no “fixing” at least in the eyes of “normal.” He will make progress, with lots of help, lots of helpers, and lots of work, but he will always have that little awkwardness. What comes normally to so many will always be a challenge to him. He will never be “fixed.” But was he ever really broken?
I thought when we struggled with infertility, it was the hardest thing I would ever go through in my life. I was failing at the one thing as a woman I was supposed to be successful at. Every month brought heartbreak, fear, pain, shattered dreams. Then Ryley was born so early. I’d failed again. But I believed this, now this is the hardest thing I will ever go through in my life. I was right to an extent. It was horrifying, painful, fearful. Shattered dreams of the perfect pregnancy, delivery, child lay all around me. The tears were countless. I was damaged, changed forever. The scars remain. But we have moved on. Ryley is a perfectly normal, healthy, active, beautiful, loving 12-year-old boy.
Three years ago, my oldest sister lost her battle with cancer, but not for lack of trying. She died with grace and peace. But she is gone. My big sister, my role model in so many ways, the core of our family, the queen of the smartassses is gone. There is not a day that passes I don’t think about her, feel her, hear her. It shook me, losing her. There is no recovering from loss. I thought it was the hardest thing I would go through in my life, saying goodbye to her.
Then Ethan was diagnosed. I vaguely remember driving home from the psychiatrist’s office that day, fighting back the tears and panic. For the past year, I have felt that this now truly is the hardest thing I will ever go through in my life. I can’t undo this. I can’t change him. I can’t take away the work that will have to be done, the fights that will have to be fought. I can’t make everyone understand and love him. It hurts more than words can describe what I know will likely come for him….bullies bullying, teachers (definitely not any we have now, have had, nor will have in the next couple of years) will not have compassion, I will be imperfect and fail him in one way or another. I am terrified he will see the pain on my face as I watch him struggle. I am terrified he will see the tears that flow oh so often and wonder why I have to cry. I am terrified he will one day read the words I write in private in order to release my pain and be hurt by the questions I put to God.
People will see him as broken. Heaven knows I’ve looked at it that way myself. He is not broken. He is a perfect example of God’s grace. He is able to see the world in a way I will never comprehend. He has gifts I could only wish for. His way of thinking is different. His way of relating is his own. His smile, so rarely seen in the past, has become a much more common occurrence and it is so amazing to see. He laugh is the greatest sound. He is not broken. He is a blessing who has taught me so much about life, mothering, and love. Our road will not be easy. There are sure to be tears and pain and heartbreak. Yeah, this is one of the hardest things I’ll go through in my life. The challenges are many, but the rewards are so much bigger.